Warriors in the Struggle

Being on the frontlines has kept me away from blogging, but I am back because I realized that for change to occur reports have to come back from the frontlines. I am the voice of the war occurring in health information technology.

My first post gave some background about how I became an advocate for Health Information Technology (HIT). But what you don’t see is why I continue this journey. The original flame that was lit was due to my husband, David, and his experience with cancer. However, I meet people and hear stories that continuously fuel my passion.

A dear friend of mine, Donna, told me a story about herself. She has been dealing with chronic pain issues for many years and has been to a lot of specialists and has been tested for many conditions. When she started looking for answers to her pain, it was 2005. During this time the field of HIT was just developing, so she carried around an accordion folder that held all of her test results, bills, correspondence, and actual copies of her tests on CDs. She was constantly fighting with health insurance agencies about what tests were done and whether or not she had paid for tests and co-pays, which is why she began hoarding all of her health information. She carried this accordion to every doctor’s visit, no matter what it was, because she found that none of the doctors knew about what the other doctors were doing to assist her in diagnosing the source of her pain.

It took her seven years to be officially diagnosed with Fibromyalgia. Donna just celebrated her 28^th birthday. The idea that it takes seven years to diagnose someone is obscene but happens all the time. When looking at forums where patients talk, it is clear to see that this is a pattern. On each of these forums everyone wears the badge of a warrior, indicating how long it took them to be officially diagnosed. I KNOW that with the use of Electronic Health Records and Health Information Technology, this experience would have only been a small battle versus the long war that people have to fight. Donna’s health issues could have been identified earlier, she could have been placed on medicine, ultimately understand what was causing her pain, and participate in major health changes to better her life.

Donna has put down her accordion folder and picked up a new set of weapons in the fight to empower others. She works with me now educating people about Electronic Health Records, Health Information Technology, and Health Information Exchange. While she still fights the battle with her health, she has joined in the struggle to get the word out that there is hope and health IT can be a powerful weapon for change.

I know there are limitless stories of individuals who have lost valuable time due to the lack of effective use of Health Information Technology. I want to hear your stories. I want to be your voice. Tell me about your struggles.